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From Where I Sit: A Perspective on Autism
(05/04/2004) by Unknown
From where I sit: A Perspective on
Autism
By Melissa BEE
12th October 1999
Today I learned a valuable, but painful
lesson. My partner informed me yesterday
that today, he would be out all morning and
on his return we would have some time to
spend together before excitable children
filled the house with noise and demands in
the after-school crush. But instead he stayed
home all morning and decided to move the
plans for the morning to the late afternoon
and vice versa. Whilst I waited around all
morning, and even prompted things along by
asking what he was doing, I got no response
because he lost track of what he was doing.
When he decided he was finally ready, I
wasn't. My brain had already made a
mud-map of how the day was supposed to
be. And the day was all wrong.
I felt lost and directionless. A sort of vague
yet urgent feeling that I had forgotten to do
something vitally important. A gnawing
anxiety that escalated as the day went on.
And I also felt angry. These feelings were
replaced by an enormous sense of relief
when my partner eventually left the house.
Then I realised, that only then he was doing
what the mud-map in my head said he should
be doing. I also realised that everything else
that had been rearranged in time slotted
structures according to my mud-map - had
been so totally rearranged by him, I could
not cope with it, and I had switched off
totally.
This only added to my anxiety and my anger.
Because of my inability to accept those
changes at such short notice, and the fact he
forgot that I was waiting, for when he was
ready I wasn't ready any longer and I got very
angry with him, and even more so with
myself. I was waiting for certain things to
happen, then they didn't. It caused a great
deal of pain and tears, over what to anyone
else would be a mere triviality. But was my
whole world turning upside down and inside
out.... Welcome to my world.....the world
of Autism.
What is autism? well you may ask. The
academics haven't made up their minds yet,
although there are now many shades of gray
and Autism is referred to as ASD - Autism
Spectrum Disorder.
The shades of grey go from the 'black' - the
autism that Dr. Leo Kanner, a psychiatrist at
Johns Hopkins University, first gave over 50
years ago to a group of children who were
self-absorbed and who had severe social,
communication, and behavioral problems
coined, to the condition on the other end of
the spectrum, that Hans Asperger described
as being identical, except being more
'normal' to be almost or close enough to
'normal' in autism-speak to be called 'high
functioning'.
People who have Aspergers Syndrome or
Aspergers' or more recently HFA [High
Functioning Autism] are said to have "...
concrete and literal thinking, obsession with
certain topics, excellent memories, and can
be 'eccentric.' These individuals are
considered high-functioning and are capable
of holding a job and of living independently."
Just like 'normal' people. Just like me. Maybe
like you.
The academics still have little grasp of the
problems the autistic adult faces, instead
focusing 90 per cent of their attention on
the child under the age of twelve. The
attitude is almost Freudian, in that after age
twelve the person almost becomes a
non-person, prompting one to ask "What
next?"
Well what next is puberty, hormonal
changes, same sex curiosity. Touching and
being touched no longer means 'ooops' Things
start happening physically and emotionally
and the autism experts run very fast the
other way and simply don't want to know
about it. Denial is rife.
There has been a forest of papers written
mostly by people who feel that autism is a
childhood mental disorder, and at puberty it
magically disappears. Only in the mental
health arena will you read about case studies
of the mental anguish that autistic youth
sometimes go through in trying to come to
terms with their own sexuality. These are
the ones we know about. What about all the
rest?
Many are depressed and most become
suicidal and try to take their own lives. I
tried. And what of the autistic person who is
also gay? Gay 'normal' youth find it difficult
to 'come out' and be accepted for who they
are. What then the person who has trouble
communicating effectively, has trouble
mixing socially, finds it difficult to accept
change and has big problems with intimacy.
Well, they effectively don't exist. Or the
autistic academia would prefer they didn't
exist. Psychiatrists simply have got no idea
where to start to help someone like this, so
they bury them under a mountain of
paperwork and proliferous excuses.
Parents search frantically for a 'cure' for
their babies for a condition that has no cure
and academics write papers about behaviour
that is observed and not understood by them
in the slightest.
Those few autistic adults that are brave
enough to speak out about what it's like on
the other side of the mirror can be treated
in enormously different ways depending on
their own affluence, and whether or not
their views fit in with current thinking.
Temple Grandin, born with the disability but
a silver spoon in her mouth and a willingness
to kow-tow to the autistic establishment has
been seen to be revered by the academics.
Yet Donna Williams [Nobody Nowhere] who
was seen as the voice in the wilderness and
embraced by the establishment was quickly
shunned after a few years after she started
to expose the charlatans and would no longer
keep quiet about it all. She has now been
silenced.
The autistic establishment does not promote
healthy happy relationships, it likes to focus
on what I call living in 'sick mode' where you
must be ill with your autism in order to be
listened to, believed and accepted. The
academics can be rude, arrogant and hostile
if you don't comply with their wishes.
So where does the autistic adult turn for
help? In the United States ANI [Autism
Network International] is the only support
that is available from coast to coast. But this
organisation is also highly tainted with
prejudice. Jim Sinclair who is the
administrator of ANI, will magically
terminate your membership if you disagree
with him. You suddenly find yourself
removed from the adult contact register (the
only way of making personal contact with
other autistic adults) and all correspondence
to him is trashed and never replied to. I
know of five people (myself included) who
have been rejected by ANI after initially
having passed 'inspection' but disagreeing
with Jim's views.
So where does that leave the autistic adult
now? On their own. There are many many
thousands of autistic adults out there
struggling to come to terms with a puzzling
world, and they will quite often give up on
trying to establish a loving sexual
relationship, marriage and even children
because its just too emotionally painful to
deal with. Those adults are in the majority.
Others force themselves into psychology and
language & communication classes forcing
themselves through painful classes to achieve
their goals. I guess you can figure which side
of the fence I'm on...and I have the barbed
wire scars to prove it. This article appears in the following topics:
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